Brody: Ways to cope with Type 1 diabetes

With all the concern these days about the nationwide epidemic of Type 2 diabetes, it's easy to lose sight of the less common but much more serious and incurable form of diabetes called Type 1.

Long known as juvenile diabetes, Type 1 diabetes affects about 1 million Americans and most often begins in childhood, although the condition sometimes develops in adults. It demands near-constant attention to blood sugar levels and treatment with insulin to keep them normal. A failure to do so can quickly become fatal.

Both types of diabetes involve an inability of the hormone insulin to do its job, but for different reasons. Insulin shuttles blood sugar, or glucose, from the bloodstream into the body's cells, where it is used as fuel. In Type 2 diabetes, which can develop at any age, the pancreas usually produces an adequate supply of insulin, but body tissues become resistant to its effects, often because of excess weight or obesity. Weight loss often reverses the condition.

People with Type 1 diabetes, on the other hand, may have difficulty keeping enough weight on their bones. It is an autoimmune condition in which white blood cells destroy the pancreas's insulin-producing cells. Without insulin, glucose cannot enter cells where it supplies the energy needed to metabolize nutrients and sustain life.

LIVING A NORMAL LIFE

Type 1 diabetes is unquestionably a challenging disease, although less so these days thanks to technological progress that has eased blood sugar testing and offered new ways to meet the body's need for insulin.

And, as two children in the Gustin family in Denver have shown, the disease need not stop people from living a normal life. Aidan Gustin, now 16, was 11 when his abnormally high blood sugar level was first detected. He had been enrolled at birth in a University of Colorado study looking for markers for Type 1 diabetes in umbilical cord blood.

Based on the presence of certain markers, Aidan was considered to be at high risk for diabetes and followed throughout childhood.

"So the diagnosis, when it came, wasn't a total shock," his mother, Carrie Gustin, said in an interview. "Our reaction was 'OK, what does he need to do to stay well?'" And Aidan, she said, "wasn't going to let diabetes change his life. He still played hockey, he skis, he goes backpacking, and he did a river trip with his dad. He now skis backcountry, and though he plans to go to college, his primary goal is to become an extreme skier."

Type 1 diabetes has long been known to have a genetic basis that somehow interacts with environmental factors — certain viruses are strong suspects — to cause an attack on the insulin-producing beta cells of the pancreas. So when the Gustins' daughter Fiona was also found, at age 9, to have the disease, her parents knew it was not a freak coincidence.

"We've tried to be very open about it," Carrie Gustin said. "There's nothing to be ashamed of. We talked to her teacher, who explained the disease to the class. The kids consider Fiona their experiment."

Like her older brother, Fiona pursues an active childhood, playing basketball, volleyball and soccer, as well as skiing. This summer, she attended a diabetes camp where, in addition to enjoying water sports, she had a chance to learn more about her condition and how to manage it independently.

"The less big of a deal we make of it, the easier it is for them," Carrie Gustin said of her children.

Perhaps most challenging has been the financial stress on their parents.

Carrie and Ian Gustin have two other children and medical insurance through Ian Gustin's job. Still, there's the monthly premium for a family of six and high deductibles ($3,000 for each or $6,000 for the family), plus substantial co-pays for the insulin pumps both children use, pump supplies, test strips for blood sugar and, of course, a steady insulin supply.

To cover the costs, Carrie Gustin said, "we have to give up other choices in life. We don't go to the zoo, the museums, the aquarium. We rarely go out to eat, we don't order delivery foods, we only go to the dollar movie theater, and our vacations are usually to visit family. My kids hear 'no' quite often."

Skiing remains the main family entertainment, with costs controlled by handing down equipment.

PREVENTING COMPLICATIONS

Along with trying to lead as normal a life as possible, the goal for the Gustin children and all others with Type 1 diabetes is to maintain blood sugar levels as close to normal as possible to prevent, or at least delay, potentially life-threatening complications.

When blood sugar levels remain chronically elevated, there is a many-fold increase in the risk of developing heart disease, kidney disease, nerve damage and stroke.

For example, in June The Lancet published online a study of nearly 21,000 patients with Type 1 diabetes who were initially free of heart disease. During a follow-up averaging nine years, those with poorly controlled blood sugar were nearly four times as likely to be hospitalized with heart failure.

Damage to nerves and blood vessels resulting from chronically high blood sugar can eventually require amputation of lower limbs and cause blindness by injuring the retina.

It is now possible to measure a substance in blood called glycosylated hemoglobin (HbA1c), which indicates how well blood sugar has been controlled. A level of 6 percent or less is normal, but above 7 percent represents an increased risk of complications. Diabetologists recommend that patients with Type 1 diabetes get an HbA1c test every three to six months to see if changes in blood sugar management are needed.

In the last 40 years, improvements in blood sugar control have resulted in an average increase of more than 15 years in life expectancy for people with Type 1 diabetes. The mortality rate associated with this disease is still higher than among people without diabetes, however.

Nutrition experts knowledgeable about diabetes control can develop meal plans that are minimally challenging. The trick is to balance carbohydrate intake with insulin requirements and, at the same time, consume a well-balanced diet.

It also is critical to match insulin requirements with the amount of energy expended through physical activities. Overexertion without a compensatory reduction in insulin can result in potentially fatal insulin shock.

Jane Brody

Jane Brody reports on health for the New York Times.

Last modified: November 29, 2011
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